Friday, March 26, 2010

I have discovered yet another potential issue with outcome trials in children. I sometimes hear that kids who stutter heavily are more likely to recover if that is true then one might get a disproportional increase of the average fluency of the group once he or she recovered.

Thursday, March 25, 2010

As much as this is a surprise to you, but I am actually getting a lot of emails asking me for advice, and I always reply and people seem to appreciate my efforts. I am not just destructive, only to those with grandiose theories on stuttering, treatment and outcome studies. I always accept your experience, but rarely your interpretation of them! A reader writes:

First of all, thanks for your advice I think will be useful for further interviews, anyway I´d like to ask you whether you always tell them about your stuttering in advance, before the interview, and whether you tell that in all the interviews you have. My point is that at the first interview with you, without telling them anything about the problem, they see you stutter, so if the process continues with further interviews I think they´re assuming that. I´ve been thinking on it and they could think you suffer a sort of depression/mental problem because the stuttering, I mean, I think that the greater the importance you give the stuttering the greater the importance they will give too. In the other hand talk openly about it should be seen as a proof of self acceptance, really I don´t know the best way for doing this.

I´d appreciate it if you could post in your blog something about this in order someone else could also give me advice, but I´d prefer do not appear the name of the company, the actuarial world is really small in this country.

My advice is:

1) Never write about your stuttering in your C.V., because they might reject you because they have so many applications and they have to reject some.
2) If you are invited for a job or phone interview, let them know that you stutter so that they don't feel duped, and say that it is of neurobiological origin, and that you are able to communicate but maybe with a bit more time.
3) In the interview, don't mention your stuttering on purpose, but openly talk about your stuttering if they ask.
4) Make a strong point and use to your advantage: Despite my stuttering, I have achieved a lot. I told myself that this job is what I really want to do, and so I did it. Some people might be more fluent but I have seen many fluent people who are less qualified and importantly less motivated than myself. Because of my stuttering, I am a better team player, because I understand people better and cater for their weaknesses.
4) If you feel they discriminate you, fuck them. Do you really what to work for such a company? ;-)

Saturday, March 20, 2010

Had my two month open label appointment with the clinic conducting the trial. The doctor said that the database with the results from Phase IIb was "locked" two weeks ago. He felt sure that they had the analyzed results that same night and that the statistician is now making sense of it all. He thinks we should have something in the next two months or so.

So expect the results within the next two months...

I get chills when I read stuff like "the statistician". Effectively, one person is analyzing the data, and everyone else is kind of accepting the verdict of that person. I have seen so many experts that are incompetent (like for the Lidcombe RCT), make a stupid mistake, are sloppy because it's Friday afternoon and they want to go home, are ideologically driven, misunderstand the nature of some data measures, fill in missing data, or on purpose don't do consistency checks because they like the result as it is. I must know, because I have probably been guilty of all but not at the same time though! ;-)

Friday, March 19, 2010

I stutter since childhood. I am over 40 now. I learned a great deal of fluency techniques, but I still wasn't able to get rid of stuttering. However. Recently my speech improved significantly. The reason? First, I read the book by John Harrison, which I recommend to anyone who stutters (Redefining stuttering) and I read the book by Bob Bodenhamer. After applying the methods outlined in both books, I am now able to 1) talk on the phone without fear or much blocking 2) increase my fluency with strangers and at home 3) noticeably reduce the occurrence of difficult speech blocks. 4) change my attitude toward my own stuttering and myself. If stuttering is purely "organic", "genetic" "mechanic" etc thing, then how come I was able to increase my fluency purely by changing my mindset and using methods like intentional stuttering and observation of my blocking behavior? I agree that there should be some genetic predisposition to developing of stuttering (high sensitivity, quick stress reaction, may be even some problems in hemispheres communication etc), but they do not make stuttering. And my own experience confirms that changing the attitude and mindset is very efficient way to increase fluency. maybe NLP is not a magic cure, but it helps nevertheless.

Anna write a sensible email, and here are my thoughts:
1) You are taking your specific case and you are generalizing to stuttering in general. Maybe you are a special case. Maybe 100s have tried NLP and it didn't work!
2) You might have a distorted view on your stuttering, i.e. an external observer might view your stuttering as very mild but you are internally severely affected by occasional blocks. Changing your attitude might well change your handicap a lot.
3) Stuttering can be genetic and neurobiological and the symptoms can be affected by attitude. If you are in a wheelchair, your well-being is significantly affected by your attitude and activities despite you having a very mechanical problem. There is no paradox here.
4) NLP are not much different from techniques that you could get from a good psychotherapist.
5) Maybe you are just in a stage of your life where you are just ready to change, and any more psychologically oriented treatment might have helped you.
6) Maybe your fluency was just a lucky period and now you are stuttering more again.
7) The theory of NLP on stuttering is very clearly wrong; there is now clear evidence for genetics and neurobiological issues. But that does not mean that techniques can help.
8) Genetics and neurobiology makes you stuttering, attitudes modulate your symptoms.
9) Changing attitude and mindset definitely reduces the handicap both behaviorally and emotional/cognitively.
10) Are you a real person, and not made up by NLP people...

Here is the abstract and summary of my talk proposal that was accepted:

Explaining natural recovery in a neurological demand and capacity model

Abstract
Why do most children recover? How do the neurobiological, behavioural and cognitive aspects of adult stuttering fit together? We developed a framework with a neurobiological basis, which we model to a first order approximation as a neurological demand and capacity model, acting

Tuesday, March 09, 2010

Here is what you should watch out in the Pagoclone Phase IIb results: the baseline. I claim the baseline results will have a significant impact any outcome study. Why?

The Phase IIb is a random contol trial with participants randomly and blindly assigned to a group. One of the random group is the placebo group. They have been given an empty pill for 9 months (I believe), and can be considered the baseline. We should expect a baseline effect, i.e. the placebo effect, in the short term. The question is what happens after 9 months with the baseline. Is it back to zero or not? What are the implications?

If baseline after 9 months is zero:

1) no placebo effect after 9 months and the placebo is only in the short term.

Saturday, March 06, 2010

I am not sure you know about my two side blogs. (You might want to follow them ;-)

The Holy Meme is about the concept of memes and about the current book project. Together with a friend who has a PhD in psychology, I have developped an operationalizable biopsychosocial model to describe humans, effectively a framework to study human processes like behaviours, experiences, and other changes. The model is also fundamental for my meta-theory on stuttering.

No Parrotting Please is on mental tools like avoiding logical fallacies or ways to think clearer and about my articles of my Science Column at the Luxembourg daily Tageblatt. I have my own bi-monthly column (with picture!) where I fight the same ghosts as on TheStutteringBrain in areas and topics touched by natural or social sciences. I am happy to report I have not been fired yet...

What are my plans for TheStutteringBrain? My ultimate plan is to write a popular-scientific book on stuttering covering all aspects of stuttering (like first-person view, second-person view, history, genetics, psychology, brain imaging, treatment approaches, outcome studies, politics and any other view points) and then proposing a framework within which to understand the multi-causal and multi-symptomatic nature. And then STOP!!! But not yet, because I first have to write another book, pass an exam with 2500 pages to study, and earn some money. Maybe in 2011. What a shame, because I have already written the book in my head! In the mid-term, I intend to keep on blogging, and I am happy to give the stage to guest bloggers.

Friday, March 05, 2010

There is a clinical symposium from May 22nd-26th at Cavtat on the Croatian coast. Suzanna and Mark have managed to get a wide range of therapists with different approaches to attend. Some speakers are clearly chasing phantoms and I have already received two emails from people asking me to condemn the conference! But the conference is a good idea, and exposure to other approaches is never wrong. I just hope that they (a) have real debates and not monologues with occasional giggly blonde meaningless talk, (b) don't fall into self-congratulatory mood, (c) look at outcome data for adults, (d) out Webster, Speak Easy, and Air flow as seriously misleading their patients on outcome, and (e) tell everyone how effective early childhood intervention is based on flawed studies.

Tip: If you want to save money, stay somewhere nearby and do not book via their agency! I overpaid by 50% when I was at the ISA conference!

Thursday, March 04, 2010

People have looked for a cause of stuttering for 5,000 years," said Dennis Drayna, a researcher at the National Institute on Deafness and Other Communication Disorders, and a co-author of the study. "Many, many things have been suggested as a cause of stuttering. None of them have turned out to be true. For the first time today, we know one of the causes of this disorder.

My first reaction was to discard his comment as a science ego going too wild, and to write a post on how wrong he is. So I have been thinking a bit more about the recent discovery revealed one year ago on this blog. And I have to say that I completely agree with Dennis. This is the most important scientific discovery about stuttering ever! I mean ever, and I do not think that another experimental discovery will come that is of as important significance to the understanding of stuttering as this one.
As I explained here, there is now a clear correlation between a gene mutation and the disorder. In a sense that's all we need and that is what has been missing all these years. All previous findings were statistical in nature, but here we seem to have a one-to-one correspondance. It's like getting a foot in the door. That's all you need, and the rest are details, i.e. years of long detective work.
The key is that scientific questions can now be asked in a sharper and efficient way:
- create subsample of just those with mutation and do many experiments. the signal should be much clearer.
- what does this mutation exactly do?
- understand the impact of proteins on cells.
- which cells are sensitive to this and why?
- search for other genes that cause stuttering.
- many more genetics teams should take up this challenge.
- is there really a one-to-one correspondance? look deeper.
- where does the modulation of the disease come from.
- can we give a substance to compensate for damage?
- ask for much much more funding.
- many more real scientists because they see hard facts and want to work on it.
- neuroscientists who did stutterers need to ask themselves what this discovery meme for them.
- therapists have to face the fact of a biological basis.
- what is the role of these sensitive cells in speech and language?